The NDIS and me #1

My first National Disability Insurance Scheme (NDIS) “package” was approved recently. For those who like the punch line up front, so far the experience of becoming an NDIS participant has been a good one for me. I’m right at the beginning of using this new system, but since I agonized for many months before I decided to go ahead and apply for a support package, I thought some of you might find it useful to know why I hesitated, what made me take the plunge, and how the process has worked for me so far. Here goes…….

It was from staff at MS that I first learned about the NDIS. Initially I heard a presentation about what was happening in one of the pilot areas. Next I watched some of the “My NDIS story” videos that were made about real people with MS (and with a wide range of support needs) who became participants. When the NDIS was about to roll out in my region (mid 2016) I attended an excellent local education session, where the evolving system was explained, examples were described of how it was working for some people with MS, and each of us had time to ask our questions.

Some of what I learned encouraged me to consider applying. I certainly wanted to make sure I was a participant before I turn 65 and become ineligible to sign on, but this gives me several years yet! The ways MS affects me are almost entirely invisible, so I wondered whether the NDIS staff would understand these and accept them as “real” disabilities. I was heartened by hearing examples of others with MS who don’t have visibly obvious problems and who were offered supports to assist them to achieve their goals.

But I hesitated. The biggest “hurdle” for me in applying to become an NDIS participant is that I can still work, at least part time, and I know there are many others out there doing it a lot tougher than I am. When I can’t manage something (such as anything that involves climbing a ladder) I pay someone to do it for me. Similarly, I employ someone to clean my home regularly, so I don’t use up my available energy on housework. Paying for this type of thing out of a part time salary is not always easy, but so far it has been possible for me. Is it OK to discuss whether some of this could be covered by the NDIS if I am managing on my own at this stage?

In the end, almost a year after the NDIS rolled out in my area, I decided to look into it. I figured it would be interesting to see how the NDIS approached someone who epitomizes the person with MS who “looks so well” but who has also real and disabling symptoms. I wasn’t expecting a lot of support, but the guarantee that I would at least be no worse off if I became a participant was a nice motivator. Here are the steps it took for me to achieve an NDIS package, and some of what I’ve learned so far:

Contacting the NDIS

The first step was getting in touch with the NDIS by calling 1800 800 110. The first time I phoned them, I expected to be on hold for at least half an hour. I needn’t have worried! Almost before the recorded message had finished playing, I was speaking with one of the friendliest and most knowledgeable call centre staff I have ever encountered. The call took a while, as she had to double check all my details and make sure I was not already in their system before allocating me an NDIS number, but she repeatedly apologized for the time things were taking and could not have been nicer. Before we hung up, I had my NDIS case number safely recorded and had been told that the access form I would need to fill in was in the mail.

For those who, like me, worry about calling 1800 numbers after poor experiences with other agencies, I cannot speak highly enough about the NDIS call centre. I may have just been lucky, but I have now called them a few times, and I have never had to wait more than a few minutes before I’m speaking with a real person. And the people I’ve encountered have been pleasant and able to answer my questions without referring me on to anyone else. Let’s hope this doesn’t change!

The access form

As promised, my NDIS access form arrived by mail within days. This is a form where I had to put down a few very basic personal details along with the fact I have MS, and a health professional has to fill in how MS impacts on my function in various aspects of my life. I had mine filled in by the Occupational Therapist (OT) who works with me at the MS Employment Service, and after seeing the way she filled it in, I would strongly recommend using someone like her who has a lot of experience with the NDIS system if you can. She described things like the impact of fatigue on my daily function in ways that most doctors would not have a clue about. If any of you have primarily invisible MS symptoms and are having your GP or Neurologist fill in this form, make quite sure your doctor has a complete understanding of how your symptoms impact on your life and your ability to complete everyday activities, and also consider contacting your state MS organisation for advice.

Gaining access

Soon after I sent my form back, I was phoned by the person who had been allocated my case. I learned that I had been “accepted” for a planning conversation, and they wanted to arrange a time. I didn’t have to insist on a face-to-face meeting (which is what I wanted) as she offered this as her preferred way of doing things. She said she liked to do them in the participant’s own home, so she could understand their situation as well as possible, and with an advocate present if required. After a few emails back and forth, a time and date was chosen for her to meet me and the OT from the Employment Service at my home.

Preparing for planning

Around the time that the NDIS began to roll out in my area, MS sent me some paperwork I could use to prepare for a planning meeting. It’s available on their website, and is basically a checklist that covers various aspects of your life where you may currently be receiving support, either formal or informal, and areas where you might benefit from supports. By working through this, I got a more complete picture of what I had done so far to make my life with MS work as well as possible, and what additional assistance I might benefit from. I made sure to read through this again the morning of my planning conversation so that it was all fresh in my mind.

The planning conversation

The NDIS lady arrived at my home on time with her tablet computer (the OT from the Employment Service was already there) and we made ourselves comfortable at my table. After a brief introduction and discussion to make sure I understood the basics of what the NDIS is, she launched into a long series of “routine” questions that are asked of every potential participant. We spoke about many different aspects of life, what informal and formal supports I currently have in place, what activities my MS impacts on, and more. We also discussed what my goals were, covering big picture things (my desire to maintain my function, continue to work in my current job, and continue to live independently in my own home) as well as shorter term things (for example, I came up with a personal fitness goal I hope to achieve this year). No promises were made about what sorts of supports I might or might not be offered, but we agreed that if I were given a package, I would like to self-manage it. My reasoning was that I did not expect a large or complex package, given my current level of function, and I normally do manage my own finances. As she left, the lady told me to expect to hear something quite soon.

Waiting for news…….

Several days after the planning conversation, I received a letter in the mail giving me an access code that enabled me to log into the NDIS portal on www.my.gov.au (where I already had an account covering Medicare and Centrelink). This allowed me to see the outcome of my application as soon as it was ready, and also enabled me to put my bank account details in so that any future payments would go to the right place.

The first clue that something was happening was about a week after my meeting, when I received notification from Centrelink that my Mobility Allowance had been cancelled because I had become a participant in the NDIS. Sure enough (after a lag time of about 48 hours) when I logged in to the portal, I had a plan!

The plan

I had expected that an NDIS plan would be quite clear on exactly what was funded, with an itemised budget. But this is not the case at all. My plan lists my goals, the supports I currently have, and the budget I have been allocated in each of several areas (assistive technology, improved daily living, transport, capacity building, and core supports [including consumables, social, community and civic participation]). Because I am self-managing, I’ll have to find out over time exactly what I am allowed to use NDIS funds for. But as I understand it, so long as I stay within the budget I have been offered, I may spend the funds on anything that fits within those broad areas and that is “reasonable and necessary” to achieve my goals despite the impact of my MS on me. This level of flexibility is going to make using the system a challenge in some ways, and I can see that self-management might not be a good idea for those with more complex needs and larger budgets to manage. I’ll let you know in a few months whether I’m glad I decided to go down this route myself!

We are promised that if we become participants in the NDIS we will be no worse off in terms of disability supports than we were before. Like many people with MS, one of the very concrete supports I previously received was the Mobility Allowance and the Health Care Card that came with it. I can confirm that the “Transport” part of my NDIS plan is exactly equivalent to the allowance I previously received from Centrelink and is being paid directly into my bank account each fortnight, just as it was before. My Health Care Card is still valid, as is guaranteed. I’ve heard a lot of people express (unfounded) concerns that they’d be better off keeping the Mobility Allowance than signing up with the NDIS and losing their Health Care Card. Those currently on the Mobility Allowance will not be worse off if they are accepted as participants in the NDIS. In my case at least, I am clearly going to be better off.

If you’ve read this far, it’s probably obvious that I’m glad I applied to become an NDIS participant and would encourage others whose MS impacts on their daily function to do the same. Not everyone I’ve spoken with is as happy as I am with the process and the plan they have been given – and perhaps my enthusiasm will diminish over time as I experience the realities of the system and/or my own support needs change. I’ll certainly aim to make another post in a few months to let you know how the self-management thing is going! Meanwhile, if you haven’t already begun trying to understand what the NDIS is and what it might mean for you, I’d recommend starting by reading the information on the MS website and watching the “my NDIS story” videos.

Like any new system, the NDIS will have flaws. I’m sure some people will have a much better experience than others (maybe some of you have your own tips / warnings / experiences you’d like to share in the comments section below). But if you live with a potentially disabling condition like MS and you are not yet 65, becoming a participant before you become ineligible to sign up seems like a worthwhile thing to attempt.